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1.  Facilitators and barriers to hypertension self-management in urban African Americans: perspectives of patients and family members 
Introduction
We aimed to inform the design of behavioral interventions by identifying patients’ and their family members’ perceived facilitators and barriers to hypertension self-management.
Materials and methods
We conducted focus groups of African American patients with hypertension and their family members to elicit their views about factors influencing patients’ hypertension self-management. We recruited African American patients with hypertension (n = 18) and their family members (n = 12) from an urban, community-based clinical practice in Baltimore, Maryland. We conducted four separate 90-minute focus groups among patients with controlled (one group) and uncontrolled (one group) hypertension, as well as their family members (two groups). Trained moderators used open-ended questions to assess participants’ perceptions regarding patient, family, clinic, and community-level factors influencing patients’ effective hypertension self-management.
Results
Patient participants identified several facilitators (including family members’ support and positive relationships with doctors) and barriers (including competing health priorities, lack of knowledge about hypertension, and poor access to community resources) that influence their hypertension self-management. Family members also identified several facilitators (including their participation in patients’ doctor’s visits and discussions with patients’ doctors outside of visits) and barriers (including their own limited health knowledge and patients’ lack of motivation to sustain hypertension self-management behaviors) that affect their efforts to support patients’ hypertension self-management.
Conclusion
African American patients with hypertension and their family members reported numerous patient, family, clinic, and community-level facilitators and barriers to patients’ hypertension self-management. Patients’ and their family members’ views may help guide efforts to tailor behavioral interventions designed to improve hypertension self-management behaviors and hypertension control in minority populations.
doi:10.2147/PPA.S46517
PMCID: PMC3743518  PMID: 23966772
hypertension; patient perspective; qualitative research; health disparities
2.  Development of a decision aid to inform patients’ and families’ renal replacement therapy selection decisions 
Background
Few educational resources have been developed to inform patients’ renal replacement therapy (RRT) selection decisions. Patients progressing toward end stage renal disease (ESRD) must decide among multiple treatment options with varying characteristics. Complex information about treatments must be adequately conveyed to patients with different educational backgrounds and informational needs. Decisions about treatment options also require family input, as families often participate in patients’ treatment and support patients’ decisions. We describe the development, design, and preliminary evaluation of an informational, evidence-based, and patient-and family-centered decision aid for patients with ESRD and varying levels of health literacy, health numeracy, and cognitive function.
Methods
We designed a decision aid comprising a complementary video and informational handbook. We based our development process on data previously obtained from qualitative focus groups and systematic literature reviews. We simultaneously developed the video and handbook in “stages.” For the video, stages included (1) directed interviews with culturally appropriate patients and families and preliminary script development, (2) video production, and (3) screening the video with patients and their families. For the handbook, stages comprised (1) preliminary content design, (2) a mixed-methods pilot study among diverse patients to assess comprehension of handbook material, and (3) screening the handbook with patients and their families.
Results
The video and handbook both addressed potential benefits and trade-offs of treatment selections. The 50-minute video consisted of demographically diverse patients and their families describing their positive and negative experiences with selecting a treatment option. The video also incorporated health professionals’ testimonials regarding various considerations that might influence patients’ and families’ treatment selections. The handbook was comprised of written words, pictures of patients and health care providers, and diagrams describing the findings and quality of scientific studies comparing treatments. The handbook text was written at a 4th to 6th grade reading level. Pilot study results demonstrated that a majority of patients could understand information presented in the handbook. Patient and families screening the nearly completed video and handbook reviewed the materials favorably.
Conclusions
This rigorously designed decision aid may help patients and families make informed decisions about their treatment options for RRT that are well aligned with their values.
doi:10.1186/1472-6947-12-140
PMCID: PMC3560257  PMID: 23198793
Kidney disease; Decision aid; Literacy; Numeracy; Cognitive function
3.  The providing resources to enhance African American patients’ readiness to make decisions about kidney disease (PREPARED) study: protocol of a randomized controlled trial 
BMC Nephrology  2012;13:135.
Background
Living related kidney transplantation (LRT) is underutilized, particularly among African Americans. The effectiveness of informational and financial interventions to enhance informed decision-making among African Americans with end stage renal disease (ESRD) and improve rates of LRT is unknown.
Methods/design
We report the protocol of the Providing Resources to Enhance African American Patients’ Readiness to Make Decisions about Kidney Disease (PREPARED) Study, a two-phase study utilizing qualitative and quantitative research methods to design and test the effectiveness of informational (focused on shared decision-making) and financial interventions to overcome barriers to pursuit of LRT among African American patients and their families. Study Phase I involved the evidence-based development of informational materials as well as a financial intervention to enhance African American patients’ and families’ proficiency in shared decision-making regarding LRT. In Study Phase 2, we are currently conducting a randomized controlled trial in which patients with new-onset ESRD receive 1) usual dialysis care by their nephrologists, 2) the informational intervention (educational video and handbook), or 3) the informational intervention in addition to the option of participating in a live kidney donor financial assistance program. The primary outcome of the randomized controlled trial will include patients’ self-reported rates of consideration of LRT (including family discussions of LRT, patient-physician discussions of LRT, and identification of a LRT donor).
Discussion
Results from the PREPARED study will provide needed evidence on ways to enhance the decision to pursue LRT among African American patients with ESRD.
Trial registration
ClinicalTrials.gov NCT01439516
doi:10.1186/1471-2369-13-135
PMCID: PMC3489555  PMID: 23057616
Shared decision-making; Live kidney transplantation; Live kidney donation; Chronic kidney disease; End stage renal disease
4.  Effectiveness of Educational and Social Worker Interventions to Activate Patients’ Discussion and Pursuit of Preemptive Living Donor Kidney Transplantation: A Randomized Controlled Trial 
Background
Many patients with chronic kidney disease (CKD) have difficulties becoming actively engaged in the pursuit of pre-emptive living donor kidney transplantation.
Study Design
The Talking About Live Kidney Donation (TALK) study was a randomized controlled trial of the effectiveness of educational and social worker interventions designed to encourage early discussions and active pursuit of pre-emptive LKT among patients with progressive CKD.
Setting & Participants
We recruited participants with progressive CKD from academically affiliated nephrology practices in Baltimore, Maryland.
Intervention
Participants randomly received 1) “Usual Care” (routine care with their nephrologists), 2) “TALK Education” intervention (video and booklet), or the 3) “TALK Social Worker” intervention (video and booklet plus patient and family social worker visits).
Outcomes
We followed participants for 6 months to assess their self-reported achievement of behaviors reflecting their discussions about LKT and/or pursuit of LKT (discussions with family; discussions with physicians; initiating recipient evaluation; completing recipient evaluation; identifying a potential living donor).
Measurements
We assessed outcomes via questionnaire at 1, 3, and 6-month follow up.
Results
Participants receiving Usual Care with their nephrologists (n=44), TALK Education (n=43), and the TALK Social Worker (n=43) were similar at baseline. TALK Study interventions improved participants’ LKT discussion and pursuit behaviors, with the Social Worker leading to greater patient activation (participants’ predicted probability (95% confidence interval) of achieving LKT discussions, evaluations, or donor identification over 6 months in Usual Care, TALK Education, and TALK Social Worker groups: 30% (20%–46%), 42% (33% –54%), and 58% (41% –83%), respectively (p=0.03).
Limitations
Our population was well educated and mostly insured, potentially limiting generalizability of our findings.
Conclusions
TALK interventions improved discussion and active pursuit of LKT among patients with progressive CKD and may improve their utilization of pre-emptive LKT.
doi:10.1053/j.ajkd.2012.08.039
PMCID: PMC3710736  PMID: 23089512
5.  COACH Trial: A Randomized Controlled Trial of Nurse Practitioner/Community Health Worker Cardiovascular Disease Risk Reduction in Urban Community Health Centers 
Background
Despite well-publicized guidelines on the appropriate management of cardiovascular disease (CVD) and type 2 diabetes, the implementation of risk-reducing practices remains poor. This paper describes the results of a randomized controlled clinical trial evaluating the effectiveness of a comprehensive program of cardiovascular disease risk reduction delivered by nurse practitioner/community health worker (NP/CHW) teams versus enhanced usual care (EUC) to improve lipids, blood pressure, glycated hemoglobin (HbA1c), and patients’ perceptions of the quality of their chronic illness care in patients in urban community health centers.
Methods and Results
A total of 525 patients with documented cardiovascular disease, type 2 diabetes, hypercholesterolemia, or hypertension and levels of LDL-cholesterol, blood pressure or HbA1c that exceeded goals established by national guidelines were randomized to NP/CHW (n=261) or EUC (n=264) groups. The NP/CHW intervention included aggressive pharmacologic management and tailored educational and behavioral counseling for lifestyle modification and problem solving to address barriers to adherence and control. As compared to EUC, patients in the NP/CHW group had significantly greater 12 month improvement in total cholesterol (difference, 19.7mg/dL), LDL cholesterol (difference,15.9 mg/dL), triglycerides (difference, 16.3 mg/dL), systolic blood pressure (difference, 6.2 mm Hg), diastolic blood pressure (difference, 3.1 mm Hg), HbA1c (difference, 0.5%), and perceptions of the quality of their chronic illness care (difference, 1.2 points).
Conclusions
An intervention delivered by a NP/CHW team using individualized treatment regimens based on treat-to-target algorithms can be an effective approach to improve risk factor status and perceptions of chronic illnes care in high risk patients.
doi:10.1161/CIRCOUTCOMES.111.961573
PMCID: PMC3218795  PMID: 21953407
Randomized trial; Cardiovascular disease; Diabetes; Prevention
6.  Factors that Influence Quality of Life in Rural Children with Asthma and their Parents 
Introduction
Among rural children with asthma and their parents, this study examined the relationship between parental and child reports of quality of life and described the relationship of several factors such as asthma severity, missed days of work and asthma education on their quality of life.
Method
Two hundred and one rural families with asthma were enrolled in a school-based educational program. Intervention parents and children received interactive asthma workshop(s), asthma devices and literature. Parent and child quality of life measurements were obtained pre and post intervention using Juniper's Paediatric Caregivers Quality of Life and Juniper's Paediatric Quality of Life Questionnaires. Asthma severity was measured using criteria from the National Asthma Education and Prevention Program (NAEPP) guidelines.
Results
There was no association between parent and child total quality of life scores, and mean parental total quality of life scores were higher at baseline and follow-up than those of the children. All the parents' quality of life scores were correlated with parental reports of missed days of work. For all children, emotional quality of life (EQOL) was significantly associated with parental reports of school days missed (p= .03) and marginally associated with parental reports of hospitalizations due to asthma (p=.0.08). Parent's emotional quality of life (EQOL) and activity quality of life (AQOL) were significantly associated with children's asthma severity (EQOL, p=.009, AQOL, p=0.03), but not the asthma educational intervention. None of the child quality of life measurements were associated with asthma severity.
Discussion
Asthma interventions for rural families should help families focus on gaining and maintaining low asthma severity levels in order for families to enjoy an optimal quality of life. Health care providers should try to assess the child's quality of life at each asthma care visit independently of the parents.
doi:10.1016/j.pedhc.2007.07.007
PMCID: PMC2592842  PMID: 18971080

Results 1-6 (6)